Keeping RA on the back burner of life

A Funny Thing Happened on the Way to My Grave

It was 2004 and calamity struck. In stages. It started the previous Christmas Eve. My doctor called me. Doctors don’t call you on Christmas Eve just to say hello. My daughter needed a biopsy, ASAP, he said. She was subsequently diagnosed with invasive thyroid cancer. Something we didn’t know until the second pathology report, and that necessitated two surgeries. Two weeks apart. The surgeon had tried to leave a smidgen of thyroid, so she wouldn’t be dependent on medication for the rest of her life. She was nineteen.

By April, we’d made it through radiation treatments, and then came May. I severed the tip of one finger trying to pry the stopper off the drainage hole of a large plastic planter, with a knife. My plants always bring me a sense of peace, working with them, or just communing with them. I felt the knife go through my finger as blood spurted. I grabbed a paper towel and jammed the finger end back on. It had already gone as white as the paper towel. The ER attending had been a plastic surgeon back in India. My finger survived intact, though for many years it was excruciatingly sensitive to touch. Nerves have a long memory.

Meanwhile, I was feeling weak, having generalized pain, along with localized pain to my joints. My stamina was decreasing rapidly, making me glad for my office job. I knew that my ICU days were a thing of the past; my body could no longer sustain the hectic pace. The rheumatologist treated me for arthritis, and though he did mention the possibility of RA, he did nothing to diagnose it or treat it. In July, while leaving his office after my final visit to him, my sister called. My father, who’d been in the hospital, had died.

I dreaded the three-hour trip back home. The necessity to change flights in Houston. The need to run from one terminal to another, carrying heavy luggage along with my heavy heart. I felt I was short-changing my father, thinking about myself instead of him. But, oh the pain! In my body, and in my soul.

Upon my return, I had my PCP refer me to another rheumatologist. “This man is going to kill me,” I said. The soonest I could get an appointment was for mid-October. I hoped to make it till then.

October 3rd found me lying on an ER bed, in a scene straight from TV. I watched it all from above. Or maybe I only imagined seeing it, as I had been on the other side of that bed countless times.

It turned out not to be anything as obvious as the hammer-fall of a heart attack. No, it was something more insidious. Something that slithers toward you, with its own intrinsic ebb and flow. Something that can be innocuous or deadly. The bane of RA sufferers. Fluid.

With the passage of time, fluid had been collecting not only in my joints, but also around my heart and lungs. Till one day, I could no longer stand for the few minutes it took to shower, nor could I speak well enough to make myself understood.

The new rheumatologist’s first words, after hearing my history, made my eyes fill with even more fluid. “Don’t worry,” he said, placing his hand on my arm, “We’re going to find out what it is.”

“IT” turned out to be RA, and though he started to attack it aggressively, I continued to worsen. It had been allowed to grab a stranglehold on me, and it didn’t seem to want to let go.

I resigned my management position of the busy telephone triage department; I couldn’t keep up with all its intricacies. I remained part-time, but that did not help matters. Being tied to a desk made my hips ache so. Holding the phone to my ear while typing on a computer keyboard made my wrists and elbows scream with pain by the time my six-hour evening shift ended.

At night, I longed for the pain to subside just enough to let me sleep a little. And fearing that death was on the horizon, I retired. I had to conserve my dwindling physical and mental energies for my youngest child. It would be two more years before she went away to college. She needed me, and I needed to give her my last days.

Thank you, Lana. I appreciate it. I hope you do as well. It is a crappy disease. And the worse part is that you don’t look sick, yet getting out of bed can take half an hour of planning! Take care, looking forward to reading your blog.